Monthly Archives: October 2013

My apartment building is testing the alarm system so I’m at the park today, sitting at a picnic table, writing. It’s a beautiful day and the park had been deserted until a few moments ago when a group of kids on a field trip showed up to eat lunch at the picnic tables and play on the nearby playground.

Watching them find seats and settle down to lunch reminds me of how much I dreaded field trips as a kid. The unfamiliarity of the setting. Having to find someone to sit with on the bus. Worrying that I would end up without anyone to hang out with during the inevitable free time we were given as a reward for enduring the educational portion of the outing.

As the kids are finishing up their lunch and breaking into little groups to play football or soccer, I hear a crash. Two boys were off by themselves swinging on the swings and one of them has literally fallen on his face. He gets up, pressing his hand to his mouth, but doesn’t cry or run to the adults for help. Instead he walks off to the side of the playground, away from the group, repeatedly touching his lip and looking at his fingers.

None of the adults notice what’s happened. They’re distracted by the other children, most of whom don’t hesitate to seek out their help or attention.

The other boy on the swings saw his playmate fall and ignored him.

The whole situation feels painfully familiar. The wandering off to play alone. The clumsiness. The embarrassment at getting hurt and the subsequent refusal to seek help. The two boys playing side by side but showing little interest in each other. The invisibility. Continue reading Hovering on the Fringe→

Autism is often a hidden disability. There is no universally visible signifier–no mobility aid that we all use, no assistive technology or service animal or language common to all or even most autistic people. While many of us use assistive technology, many others go through our days–our lives–passing for nondisabled.

Or do we?

If you’re autistic, you can probably recognize other members of the tribe fairly easily. Maybe by their stims or their use of AAC, their noise cancelling headphones or by the body language that’s so like your own. We all have our tells.

I know mine. Atypical eye contact and body language are the most obvious. Occasionally my voice gives me away as different–it’s too loud or too mumbly or too flat or simply decides not to exist. If none of those is a tip-off, well, it’s only a matter of time before I have a social communication mishap.

Back when I first started reading about ASD, I came across David Finch’s “Journal of Best Practices.” If you haven’t read it, all you need to know is that after being diagnosed with Asperger’s he started keeping a journal filled with social rules (best practices) that he wanted to remember.

What a great idea, I thought. I should do that!

Yeah. It turns out that I’m not anything like David Finch. He went about cataloging the rules he was learning with a humor and fanaticism that I just don’t have. I wrote down the rules I was learning for approximately . . . two weeks. Then I got distracted by some other bright shiny thing I can’t remember and abandoned the file.

As I was cleaning out my Google docs folder recently, I came across the rules I’d written down. And I have no idea what the point was, because unlike Finch, who actually set about following the rules he’d learned, all I did was write snarky explanations to justify breaking the rules.

That was a year ago, so I thought it might be fun to revisit them. For each, I’ve listed the rule, my response from a year ago and my current response. Continue reading Rules to Live By→

Thank you to everyone who shared their stories last month. It turned out that your answers to my questions were more than I could possibly use in one article. I learned so much from reading your stories. Even though I wasn’t able to quote everyone who participated, what you shared helped me to understand the issues better and I’m grateful for your insight. It’s also nice to be writing about someone other than myself for a change!

I’m in the process of developing two more articles based on the survey questions/responses so there’s a good chance that I’ll eventually include quotes from everyone who shared their thoughts.

I’ve never been good at asking for help. A few memorable examples to help you understand how nonexistent my “asking for help” skills were as a kid:

When I was five, I fell out of a tree that I was climbing and landed on my back. As you can imagine, I completely knocked the wind out of myself. Not being able to breathe was scary. Falling out of the tree hurt. Did I run to my parents in tears, wanting to be comforted? Nope. I can still remember squatting on the garage floor, crying, trying to catch my breath.

In third grade, during small group reading time, I only brought one tissue with me to the group reading table. I had a nasty cold and quickly used up that tissue plus both shirt cuffs. So I sat there, right next to the teacher, pretending that I didn’t have snot running down my face and that I wasn’t licking it as it reached my mouth. Eventually I guess she couldn’t take it anymore. She went and got some tissues, setting the box in front of me with the admonition that I should ask next time.

In sixth grade, a boy trapped me in the coat closet and kissed me. Not a cute puppy love kind of kiss. More like a gross, smelly, pinned in the corner so hard I couldn’t breathe kind of thing. I spent the rest of the spring avoiding him. He was bigger and stronger and I was afraid of him. I never told an adult. I never asked for help in keeping myself safe from him.

All three of those memories are traumatic in their own way. I remember feeling scared and alone. I don’t remember even thinking about asking for help. For some reason, among all of the options I came up with, none of them involved going to another person to see if they could assist me in solving my problem.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.